Looking for Advice

[Mallory's Mum]

It's been a few weeks since I've been on here to post (though I'm always looking). Recap on Mallory: Diagnosed Feb 12. Prednisone 30mg (taper) 6mp (6 weeks). Since April 1 (56.5 lbs) , she has been down to 15mg of the Prednisone. Previous attempts to taper gave her fevers and fatigue. The first week or so at 15 mg went great. Two weeks ago we started noticing some change in her. Hard time waking up in the morning, increased headaches, slow weight loss, increased bowel movements including loose stools (which is not like her. She is the more constipated.) On the 13th, she got blood drawn for 6mp liver follow up and it showed the her platelets were on the rise to 750K and her CRP was double what it was 2 weeks prior. On the 18th, at our IBD appt, the increased her steriods up to 30 mg and checked 6mp metabolites. She was 52.5 lbs. Since that appt, her symptoms don't seem to be alleviating much. She is having multiple stools a day with stomach pain, fatigue, some body aches, and headaches. She is also having moments of feeling pretty good. Yesterday, she was 51.5 lbs. Her doctor is suggesting putting her in the hospital for IV steriods for 5 days then starting back on the 30 mg by mouth. I don't want to say that he's leaving it up to us but he wants to regroup on Friday on the phone to discuss. He said at latest, Monday. Her 6MP metabolites came back with just a little room to move up so she will be on 37.5 mg but from his email, he didn't seem so sure that Remicade was that far off. He also said that if IV didn't work quick enough, Remicade would be started immediately.

I guess my question is, how long would you wait it out? I hate being a weight watcher but she's 9 and can't wither away any further. She is not having the huge increase in appetite like she did when she was on the 30 mg the first time. I was hoping that would kick in and she would gain some weight. It's those moments at home when she acts happy that I second guess even considering this. But some of her traits, including coming home early from school, shows me something isn't working. I'm not sure if I'm reading into it too much or what. Like when is it serious enough to go into the hospital. The hubby is out of town until friday so I feel like it's totally up to me.

Her nurse is really no help and I actually by passed her this round and emailed the doc directly. Her nurse sort of blows me off. She actually told me that maybe the steriods weren't working because she was taking liquid instead of the pills. Her nurse called today about the 6mp and told me to not look day by day but look at the big picture. But she's never been the typical presentation and you just can't look/figure all kids react the same way. Any thoughts?

 

[Jennifer]

Honestly personally I like the idea of the IV steroids and then go from there. You really don't want to wait for symptoms to be "bad enough" to go to the hospital. I was 9 when I was diagnosed and stayed in the hospital for 3 months because I had started bleeding a lot. Luckily I didn't need a transfusion but I was so weak I had to have IV fluids and they forced gut rest for a full month (didn't get any fluids by mouth for the first week). Being in the hospital for that long is rough but 5 days isn't so bad. It may really do her some good to at least have the IV fluids and rest along with the steroids.

Sure you wanna look at the big picture in her getting into remission (most important thing) but you still have to take it day by day. Keep in mind though that even if there are "good days" that doesn't mean that the problem has gone away or isn't getting worse (sometimes we don't have symptoms and we can also learn to cope and feel like it isn't so bad so you don't say anything or show as many signs of illness).

Keep us posted on whatever happens. Sorry her treatment isn't working out right now, just remember that remission is around the corner at some point.

 

[Sascot]

Sorry to hear she isn't very well at the moment. I understand completely about the second guessing the meds when she is feeling ok. However it does sound like "the big picture" is more that she is unwell (just from what I have read). Getting the IV steroids is a good idea - they will work quicker and then you will definately know whether they will help her improve or not and then make the decision on Remi easier to take.
Good luck - whatever route you have to take I hope that she feels better.

 

[Tesscorm]

If the IV steroids have a better chance of getting her symptoms under control, I would do it too.

Also, perhaps, ask your GI about enteral nutrition. Depending on the location of the crohns, it can have comparable results at inducing remission as steroids. While my son uses an NG tube to ingest the formula (he does it overnight), it is also available in drinkable formulations. There are no side effects, will provide nutrition and, I believe, can be used in conjuction with medications. It's not as commonly used in the US, so you may have to initiate conversation re EN with your GI. There's lots of info re EN on this subforum (lots of kids using it now) and also under the Treatments forum.

I imagine the IV steroids would be quicker at inducing remission but the EN is just something to think/ask about.

Good luck! I hope she's feeling bette soon. :ghug:

 

[Mallory's Mum]

Thanks for all of the input. I'm sort of leaning toward the IV meds too. We were at this crossroads last time we tried to taper down on the Steriods. They were considering the hospital admission then but she seemed ok when we stuck with it longer. It does not seem that these oral steriods are really pushing her any where near remission like everyone says. I can't stand the second guessing of myself. I guess someone hit in on the head with how Crohn's is so different. I think when she is at home, she really is at least comfortable with her environment, therefore, feels a bit better. Being 9, she doesn't always tell me her woes unless they are really bad. Guess she just deals with it, which is sad to this mum.

I have previously asked about the EN last time when she could not seem to taper down on prednison. Our GI said that EN works best on small bowel disease and Mallory does not have enough of that. Her TI is primarily affected, as is her throat and stomach. She does have minimal involvement in the colon. He said that it would help with her malnurishment but probably not with the mass inflammation.

Does longer use of steriods case some body aches? She's been complaining of that since we went up to the 30 mg. How sad is that I am just wanting her to pig out like she did last time. We could not keep enough Chex in the house or chicken. Nothing out of the ordinary this go round which doesn't sit well with me.

 

[Tesscorm]

I have no experience with steroids so am not sure about the body aches.

To help with her nutrition, have you tried some nutritional shakes as a supplement to her meals? I've read of other parents (and members) using Ensure and other similar shakes. I don't think the Carnation Breakfast shakes have the same formulation as some other nutritional shakes (like Ensure) but the Carnation shakes do taste good and have a ton of vitamins (and I think minerals too). When my children were younger (even pre-crohns), I used to split one shake between the two of them as their drink with their usual 'food' breakfast. Sometimes my kids said the pre-mixed shakes were 'too thick' (???), so I would dilute the shake with milk.

It is frustrating that it seems to be such a guessing game! Everyone responds differently and seems even the same person can respond to the same treatment differently a second or third time around! Ugghh!!

I hope, if you decide on the IV steroids, that it helps her quickly! :ghug:

 

[Twiggy930]

Hey Mallory's Mum,

What you describe with your daughter seems very similar to what my son has been going through. Oral steroids have not put my son into remission. A few weeks ago we were given the choice of IV steroids or EN. We went with EN but that hasn't put him into remission either. IV steroids sound like they might be a good option. From what our GI told us it seems that sometimes the IV steroids are needed to "jump start" the whole remission process.

While my son is certainly not anywhere near remission he has been able to taper off of prednisone (started at 40mg and now down to 5mg) without getting worse. The whole time he has been doing the taper he has been on exclusive EN. I have been wondering if the EN has been responsible for this. Having said this he is certainly not better, but not worse either. If nothing else the EN has given him GREAT nutrition. He has gained weight and is now back at his pre-Crohn's weight and I think his color looks better.

As for body aches my son had lots of aches after he had been on 40mg of pred for about 1 month. The aches seemed to move around, sometimes one leg and then the other, and were present even when just lying down. I think it is a common prednisone side effect.

We too have had the possibility of Remicade brought up with us, methotrexate was also mentioned. We have to regroup in 1 week and if nothing has changed I'm sure our GI is going to want to do something different. And so far nothing is changing...

Oh, and my son also seems better at home. He has not made it through a full day of school since January! For awhile I thought he was just trying to get out of going to school but I no longer think that. It is frustrating when it seems like they are doing a bit better after laying low at home and then they can't function at school. I think it must just take a whole lot more energy to be somewhere other than home and this is just too much for them sometimes.

:hang:

 

[Jennifer]

Yes Prednisone can cause joint pain. If it doesn't get better or go away then you'll want to inform the GI (or you could do that anyway and see what they say/suggest).

As a kid I had a hard time at school as well. In a way I didn't want to be there because I was made fun of by other students (mainly from the moon face that the Pred gave me). I tried running and playing with the other kids but noticed that I couldn't keep up anymore. I even collapsed at school from over exerting myself. I did take time off from school for a week or so after they put in a central IV (like a pic line but in my chest) but I wasn't really able to keep up with the other kids and if you sat through recess or if no one saw you then other kids would start talking about you (they talked enough already because I wasn't allowed to run with the other students and participate in PE). I never told the other students I was sick because I thought they wouldn't accept me. Only my teacher knew. Kids can be so mean.

 

[polly13]

Mallorys mum I could have written your post - we are having the exact same issues with Lucy, came down of prednisone and all symptoms are back, she is on 6 mp also, we are on week 13 and would have hoped to see some improvement at this stage. I had the remicade conversation on tuesday and like you are re-grouping in a week to consider our options as I think I GI was a little bit unsure of how to proceed and wanted to think about it.

In relation to how long you will wait it out - how long has she been on 6 mp it can take 16 weeks to work so we are going to wait it out that long I think before remicade if we can. I wonder if you can identify a weight at which you feel can wait it out any longer.
Big hugs to you and hope she is feeling better soon

 

[Jenn]

No experience with steroids. I also hate feeling like the doctor is leaving it up to us to decide on things, but I think I get it, they figure you can best assess her needs seeing her in person day in-day out. Know that you'll make a good decision based on whatever info you have now. Each round gives me a little experience for the next one. Hang in there!

 

[izzi'smom]

I always wanted to keep dd at home, as I was unsure IV steroids helped us at all. However, it can be a bit of weight off of your shoulders to have her inpt-someone else is helping you to make the daily decisions.
I think it is a personal choice, and what works for one won't work for all of us...it's hard either way! Good luck no matter what you decide, and keep us posted!!

 

[DustyKat]

Matt never responded to Prednisone but having said that he did have other complications present. He had no side effects and for all intents and purposes you wouldn't have known he was on it. During his worst phase on three separate occasions he had 5 days of IV Hydrocortisone. Although the Pred did not have a startling effect on him I do believe it stabilised his condition and the IV steroids certainly helped to bring things under control when he had acute flares and bring him back to baseline.

Have they mentioned perhaps bringing some antibiotics on board as well, something like Metronidazole (Flagyl)?

Dusty. xxx

 

[LittlebitsMommy]

I dont have alot of advice. I do know that the steriods will cause joint aches. Ko took his last does of steriods yesterday. He had started on them the 17th of Feb and had 5 days through IV and then oral. I dont want to say he is any worse but its hard to really say he is any better either. He did gain alot of weight while taking the steriods and that bothers him alot because he wasnt real tiny to start with.

I hope your DD feels better soon. I know its so hard to see them in pain.

 

[Mallory's Mum]

Thank you everyone for all of the advice and input. On Friday, I took some advice to see sort of what the bottom line is. Basically, she was on 30mg and I really did not want to up her to 40mg if it was not going to work. Our doc said that if he put her into the hospital, after treatment, she would come home on the 40. So since Friday morning, she has been on the 40mg. If there is no change on Monday, she will be admitted for IV steriods for 5-7 days. As of this evening, there is no change. She is eating like a bird. Says she is hungry but doesn't have much room. She has had an almost constant tummy ache below the belly button for the last few days. It was previously every other day. What are the signs of blockages, etc to worry about? Her disease at last scope was majorly in the TI. At this point, I am positive we will be inpatient on Tuesday. If she hasn't shown any reaction to 40mg of predisone at this point, I can't imagine she will over the next 2 days. Pretty hard for me to understand.

In the hospital, if the IV does not work in a few days, she will go straight onto Remicade. He is about 90% sure that she will be on Remicade soon but he is hoping that 6MP steps up to do it's job. I think we are not so confident at this point. Only 3 weeks ago, I felt like we were making such progress. Such a bummer the roller coaster of Crohn's puts these kiddos on. It is comforting to see that some of our kids are in the same spot right now. That sounds awful but it's nice to know that there are people that understand

She has really been battling these headaches since diagnosis. Of hand, I can't remember if they started before or after diagnosis (meds). If we are inpatient, they will do a CT of head to rule out steriod causes.

 

[Jennifer]

Ya I remember getting a CT and MRI of my head as it hurt a lot when I was on high doses of Prednisone. It can cause pain but not always damage but its always good to make sure its not causing any damage (I remember being told that the pain was from the swelling the steroids were causing).

Prednisone can work pretty quick which is I guess why the doc says that if its doesn't work in a few days then its best to go the IV steroid route.

As far as obstructions go there are partial and full blockages. Partial allows for small amounts of stool to pass (it may be ribbon shaped/thin or in the form of diarrhea) and a full allows nothing to pass leaving you in danger of a perforation and surgery. Its usually caused by a stricture be it from inflammation, scar tissue or both. Check out the forum wiki on strictures for symptoms and other threads discussing them: http://www.crohnsforum.com/wiki/Stricture

Hope something works and gets her back into remission no matter what it is.

 

[LittlebitsMommy]

I am sorry she is isnt feeling any better. I also hate to see other kids go through all this pain but I am also glad others here are able to understand what we are going through. Because alot of times it seems no one understands or even wants to understand.

Ko has lots of headaches also. He just got glasses so I am hoping this will help with some of the headaches. The steriods did help him to eat but since he came off of them he isnt eatting.

You will be in my thoughts and prayers. Sorry I am of no help at all

 

[Jennifer]

That's a very good point as well LittlebitsMommy! Gotta have your eyes checked while on Prednisone. When did she last have her eyes checked Mallory's Mum? Definitely can cause headaches for sure.

 

[Mallory's Mum]

She had her eyes checked about a month ago since i knew that they eyes had to be followed with Crohns. Sadly, it wasn't the answer to the headaches. Eyes are good and headaches not in the area of glasses type headaches.

@Crabby: Thanks for the stricture obstruction etc link. No one has really told us what to look out for. Her stools have changed over the last few weeks which was a sign for me that something was up and different.

We are hoping for remission too since we have yet to achieve it since diagnosis. Guess I will spend tomorrow getting laundry done and my house in order since I might not get the chance over the week.

 

[DustyKat]

Headaches can be an Extra Intestinal Manifestation of Crohn's. When my daughter was undiagnosed, so not in remission, headaches was one her main symptoms and they presented as very migraine like. Nothing she took helped ease them but once she was diagnosed and gained remission they took a little time to abate but have now essentially become a thing of the past. She too had her eyes tested and there were no abnormalities.

Is she able to consume enough water/fluid to keep dehydration at bay?

I so hope things settle for her soon, bless her...:hug:

Dusty. xxx

 

[Sascot]

Hope she feels better soon!